A most amusing account of my journey through adulthood
Illness is a topic we typically shy away from in this culture. It’s awkward and uncomfortable to talk about. People don’t know what to say, or how to feel. Most of the time they just don’t want to deal with it at all. I get it, people being sick makes you nervous. You feel like you don’t understand or couldn’t possibly understand, and you’re partially right. If you’re not sick yourself you’ll never fully get it (even if you are, you’ll never fully understand someone else’s sickness). However, I think it’s important to understand and empathize as much as possible. So, without further delay, here are the things I find particularly hard about being chronically ill.
1. Being sick ALL the time
Diarrhea, headache, fatigue, confusion, sniffles. All the time. On good days they’re mild enough to sort of shove aside and ignore. Sort of. I drink extra water and I take lots of vitamins, and then try to form coherent sentences. I’m lucky that I have quite a bit of sass. Usually one sarcastic comment can shut a conversation down and then I don’t have to think as hard. However, whenever I try to do something meaningful, like a homework assignment or this blog post, it takes forever. I have to read and re-read. And take breaks. Lots of breaks.
I also have a love-hate relationship with OTC meds. I’ve taken so many pills in the last few months. The days I take them are great. I can sleep soundly or function semi-normally. However, I have enough bio knowledge to know that taking anything for a prolonged period of time is going to have side effects. I try to avoid them unless I’m desperate.
2. Good days
Glorious blessed good days! How could I ever be mad about those? Well, because they’re confusing. I frequently over exert myself on good days because I want to take advantage of them. I feel great! Let’s get stuff done!!! The result is that I am extra sick the next day. On the other hand, not taking advantage sucks more. It feels like a waste of time. Like how could I not do something?? I can be miserable and boring any day. Let’s do all the exciting things now while we can!
Then, on the rare occasion when I get multiple good days together, I get false hope. Maybe it’s over! Maybe I’m better! No… just… no.
3. The not knowing
There are two sides to this. The first one is not knowing yourself. The second one is other people not knowing.
On the one hand I’m referring to the early stages of a disease, before you know what’s wrong with you. You feel awful, your body is falling apart, and there’s no explanation. No diagnosis to fall back on. No disease to blame. Your body is failing you, but you personally feel like a failure. It’s hard to accept a nameless illness. You frequently push your body past what it can handle, because you feel like you need to get yourself together. The internal pressure to behave like a healthy person is overwhelming.
On the other hand I’m referring to explaining your disease. I haven’t had the pleasure of figuring out what’s wrong with me, but I imagine it’s equally draining. Spouting big fancy science words at people and receiving blank stares back. Then having to break down what exactly is wrong with you. Having a rehearsed speech to explain what to you is just daily life.. no thank you.
4. Small Talk
I dread the question “how are you?” I can rarely say good or fine sincerely, but I also can’t start talking about my bowel movements to every random acquaintance. The fact is, not many people really want to know. Talking about being sick constantly makes me sound like I’m seeking attention. It also puts a damper on other people’s day. Even the friends who genuinely care have a limit. It’s hard to constantly listen to negative things, and I understand that. It just makes conversation awkward.
Feeling like you can’t talk openly and honestly about what you’re experiencing can be extremely lonely. At the worst of times it makes me not want to engage at all. At the best of times I feel misunderstood. Maintaining relationships is difficult. Even without emotional factors there’s the physical ones. When you’re stuck at home because you need to be in close proximity to a toilet.. there’s not many people that will just sit with you. This is why my cat is my best friend.
Anyway, this is an extremely biased perspective on what it is like to be sick all the time. I doubt it accurately reflects the thoughts and feelings of all other people with chronic illnesses, but I hope it might shed some light. I’m not looking for sympathy, just some understanding. I should mention that this topic has already been explored fairly well by Hank Green here.